Friday, May 23, 2014

Feeding Tube

We met with Will's pediatrician, she and the neurologist agree that Will should have a feeding tube. At first, I thought he didn't need one.  I would just work harder on trying to get him to eat.  The problem is with Leigh's Syndrome most of the children do not have an appetite.  We have already tried appetite stimulants (periactin) with no luck.  I know that he will do much better with a tube.  The stress of me trying to get him to eat everyday, stressing over if he got enough calories for the day or not will be gone.  I will know exactly how much nutrition he is receiving.  He will still be able to eat by mouth. All of that food will be extra calories.

Next Thursday we meet with the pediatric surgeon and schedule a  surgery date for the feeding tube. I have showed him some pictures on the computer of children with "buttons" in their bellies to help them eat.  He seems to understand.  He is such a brave little boy.

Paging Dr. Will

While I was pregnant with Lauren, Will attended almost every single prenatal appointment with me.  He really enjoyed listening to Lauren's heartbeat.. or heart beep as he would say. He would love to see her on the sonogram.  My obstetrician is very special to me.  He took great care of me while I was pregnant with Will.  I had hyperemesis and was in and out of the hospital during the first and second trimesters.  Needless to say, I was always at the doctors office.  My pregnancy with Lauren was better. I was sick but not nearly as bad as I was with Will.  After my prenatal appointments with Lauren Will would say, "Momma, I want to be a doctor".  I would smile and say that's great, one day you can be my doctor!  I hope and pray that his dream comes true!

This build a bear is from some of the students from my mom's class. Thank You so much!!  Will loves the Dr. Will bear and sleeps with him every night!

Monday, May 19, 2014

My Heart Aches...

My heart aches for my sweet little boy.  I look at his big blue eyes everyday and see such a strong boy. He has no idea that he has a terminal illness.  He doesn't understand when his legs won't move, or that he doesn't have enough energy to play, but what he does have is a brilliant mind!  His memory is sharp. I pray to God every night that a cure comes fast. I do not want my baby to lose his mind and memory.  

This past weekend and the latter part of last week he had a few episodes… He is recovering now.. His hands are still shaky and he is tired.  I am trying to keep his life stress free, no over stimulation.  It seems that could be one of his triggers. I meet with the pediatrician tomorrow morning regarding the feeding tube.  Will's appetite has been extremely low the past few weeks. He needs nutrition to provide energy for his body.  

Every night after the kids go to bed, I lay in bed and cry. I pray that I am having a nightmare and beg to be woken up.  Then I realize this is my new reality. I know I have to be strong but the pain in my heart is so intense it feels as though my chest is collapsing.  I am a fighter, Will is an even stronger fighter.  We will not let this disease take him. I hate you Leigh's Disease. You can go to hell where you belong.

Sunday, May 11, 2014

The News.

Dear Family and Friends,

On Friday April 25, Will and I were having a great day.  Will was his usual happy self.  We went shopping for fruit that morning and had a picnic in the front yard.  Things were going great, that is until he had one of his episodes.  Episodes you ask… six months ago, it all started.  Will would be playing then all of the sudden just fall. He had no use of his legs and his hands would tremble.  We would try to stand him up but, he would just fall.  The first time this happened it scared Doug and I so bad that we rushed him to the ER. Unfortunately, I was pregnant at the time and the emergency room was packed, it was flu season. By the time we reached the hospital Will was walking just fine and back to his normal self, just a little bit crankier.  His two year check up would be in a couple of weeks, so I thought I would bring it up to his pediatrician. The pediatrician thought maybe he was just tired since it happened close to bed time.  In my heart I knew something was wrong.  I wanted to believe her.  Fast forward a few more episodes later and we were back at the pediatricians office.  This time she sent us to a Neurologist.  The Neurologist ordered an EEG, which is used to check the brain for seizures.  This test came back normal.  We were relieved.  Well, needless to say the episodes happened a few more times after that.  This time happening during the afternoon and not evening like they had before.  Like I said before, in my heart I knew something wasn't right.

Back to Friday April 25, Will was having the time of his life singing with a stick (as a microphone) that he found while we were having our picnic.  All of the sudden it happened... he fell and couldn't move.  I immediately called Doug and told him to come home from work to watch Lauren so that I could take Will to the hospital and hopefully, once and for all, figure out what was going on.  Once Will and I arrived at the hospital we were brought back to a triage room pretty quickly.  The ER doctor ordered a CT scan.  About 2 hours later we had the results.  The doctor said the radiologist found 2 spots on his brain.  She was very vague and said that he would have to be transported to the downtown hospital which has a Neurology floor.  At that point Doug and Lauren were with Will and I.  It was getting late so we decided Doug would ride with Will in the ambulance and I would take Lauren home and meet them in the morning downtown.  That night I was a wreck.. My baby boy who I had spent EVERY single night with up until I gave birth to Lauren 8 weeks prior and had to stay 3 nights in the hospital would be apart from me again.  After Lauren went to bed I sat up and cried and prayed that my boy would be okay.  I think I got a total of one hour sleep.  At 6am I left for the hospital...I couldn't get there quick enough!  As soon as I walked in Will's room, doctors were coming in and out asking questions and poking and prodding Will.  The neurologist told us that they needed a more detailed picture of Will's brain which would require an MRI.  Since Will is only 2 years old he would have to be put under anesthesia.  I was so scared for my little boy.. I held him until they gave him the sedative, then they took him back…

As we waited for the MRI I prayed that my baby boy would be just fine.  Little did I know we were about to receive the worst news of our life.

After the MRI was finished about 2 hours later a group of pediatric neurologists walk in to Will's hospital room and ask to speak privately to Doug and I.  At that moment I knew my life would never be the same.

April 26, 2014 - the worst day of my life so far.  Doug and I followed the doctors to an empty hospital room with 4 chairs set up in a semi circle around a couch.  Doug and I sat on the couch the doctors in the chairs.  The first words out of the doctors mouth was that the spots originally found during the CT scan were actually lesions within Will's brain.  At that point I got up and grabbed some tissue.  She continued by saying Will has a Mitochondria disease, specifically Leigh's Syndrome.  What??  I had never heard of this.. What can we do?  What's the cure?  I asked.  She paused and said, There is currently no cure and it is terminal.  At that point, I felt like there was no air in the room, I couldn't breathe.. I was crying, I was dizzy, I felt like I needed to vomit.  I then asked how long do we have with Will.  She quietly said 10 years max.  She explained in Leigh's Syndrome, defective mitochondria result in a lack of energy being provided to cells in a particular area of the brain that plays a role in motor movements.  The symptoms start as lack of appetite, slow growth, and generally low energy, but as the disease progresses it leads to failure in critical systems of the body.. heart, lungs, brain function.  Pictures of Will flashed through my mind… How could this be.. My little boy who has NEVER been on one antibiotic is now terminally ill?  This is a nightmare... maybe I am dreaming I thought.  Everything else the doctors said from that point on was a blur.  I just wanted to hold my baby and never let go.  

Will stayed a few more nights in the hospital after his diagnosis. He had another EEG performed, an EKG, lumbar puncture and countless blood draws.  He was such a brave little boy during his stay.  I look at him and I see a fighter and strong boy who wants to live.

Leigh's syndrome has no cure. It's often called the "invisible disease" looking at Will you would never know that he is fighting for his life with a terminal illness. He is on a "Mito Cocktail" of vitamins that will hopefully slow down the progression of this terrible disease.  We can only have hope and pray that one day hopefully soon there will be a cure.

We are currently waiting for the Genetic blood test results to come back.  These tests will tell us what mutation of Leigh's Syndrome Will has and should let us know if Lauren could have this disease as well.  Please keep them both in your prayers. 

God Bless,